Welcome to the forum sorry you had to find us, but you landed in a good place for both knowledge and support.
First slow down. I know the feeling of wanting to just get it out. I felt the same way
And I know the feeling of being scared I felt the same way in that regard as well. I ultimately did surgery but not until I explored my other options and you should be the same as well. Once you do that you’ll have made an informed educated decision based on the knowledge and data that you have. And as a result no matter how things turn out you will never look back and say should’ve would’ve could’ve.
First, for sure send your slides to Jonathon Epstein Johns Hopkins. Here are instructions, https://pathology.jhu.edu/department/services/secondopinion.cfm
but you can probably just instruct your urologist to send the slides to JH Pathology and he’ll know what to do, believe me, he’s gotten this request many times before.
Second, you are in the NYC area as I am. Take advantage of it. Whatever treatment you choose you want to be treated at a major cancer center like Memorial Sloan Kettering. You can also consider NYU Perlmutter Cancer Center, or Mount Sinai, particularly if toy end up choosing surgery.
Third, when you I want to speak to somebody who is an expert in radiation I would recommend you contact Dr. Michael ZELEFSKY at Memorial Sloan Kettering Hospital. He is vice chair of the Brachytherapy service And can also talk to you about
SBRT otherwise known as cyberknife. With that said you should also talk to someone whose focus is SBRT/cyberknife. I would recommend Dr. Jonathon Haas add Winthrop/NYU Perlmutter.
By the way if you have a hard time getting an appointment with Dr. Zelefsky, which is very possible, there are many other talented radiation oncologist at Sloan Kettering. One name that comes to mind is Dr. Gewanter. There are others.
For surgery, I would recommend you speak with Dr. Ash Tewari, at Mt Sinai, and for a second view, dr. James Eastham, at Memorial Sloan Kettering. These guys are tops in our field although Tewari has more experience with robotic surgery. Full disclosure Dr Tewari did my surgery, I think he’s great.
My personal opinion and others will disagree, if the recent 7(3+4) holds, After Dr. Epstein’s second opinion, I would not consider active surveillance. If there’s any grade four in there I think it’s chancy. But that’s me, I’m conservative, some hospitals and doctors under certain very strict circumstances will except g7 (3+4) patients for their active surveillance program.
Others are going to chime in here and tell you how horrific the results are with surgery from the side effects standpoint. Some do have that experience, others don’t. Four weeks after my surgery I was fully continent, and very shortly after that had no problem achieving a more than satisfactory orgasm and erection. But you will have no ejaculate. With that said from what I have read here most guys who have some form of radiation treatment instead of surgery do experience a reduction ejaculate over time, but they don’t lose it completely
Regarding the comment that 35% of surgeries fail, I’m not sure if it’s quite that high but it could be. However what’s important, is that this points to how absolutely important it is to choose, the best practitioner with as much experience as you can find in whatever area of treatment you do choose.
You’ve got some time but get things moving. Stick around many others will chime in shortly, With many different opinions at the end of the day the right decision for you is only the one you choose. Get educated make your decision and move forward. You are going to be OK.
Keep asking questions and please keep us posted